I’m 33F and have had issues with clots for the past couple of years. I tested positive for antiphospholipid syndrome, once, but my primary care who is an NP never really seemed to say anything about it or advise me how to proceed. Is it actually that big of a deal? I’ve seen a lot of doctors and everyone is ambivalent on whether or not I need to actually take blood thinners. My insurance doesn’t cover Xarelto anymore, but I got a coupon for 30 days, after my emergency room visit last week (which didn’t turn out to be a clot, but leftover edema?) so I’m good for at least a month. I’m just pretty frustrated because professionals seem to be pretty nonchalant about this but I feel like I’ve got a bomb in my leg that could go off at any time, or something. This whole situation has left me exhausted, depressed, and hopeless. Any advice?
If you have APS and have clotted it is my understanding that you should be on blood thinners for life. It's unfortunate that none of the medical professionals near you are taking this serious. Maybe you can see a rheumatologist or a hematologist. It's hard because not a lot of doctors have experience with APS.
Thank you! I have seen a hematologist oncologist, so my next stop is the rheumatologist I think. The ED suggested Vascular so I will try to find someone there too…
Even my hematologist is sorta clueless about APS. It’s pretty rare.
Yeah I recommend learning as much as you can you might know more than your doctor! I had to get surgery and I advocated for myself to have a smaller window of time that I was not on blood thinners and they used heparin. I had researched it and seen what others had done and my doctor was good with it.